Hello. My name is Wendy. I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease. Unless something amazing happens, they are not going to go away. Sometimes I feel I need to make this statement before anyone speaks to me.
Recently I was asked a few things about my health. This was not by people who see me often, or have much knowledge about my illnesses. This is how I handled a few of the questions, some of it was good, some not so good.
Have you tried yoga? It can really help your balance. I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class. It can only help your balance if you have some to start with! After having a disease ruin your balance system, yoga isn’t possible. (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know. However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga. And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)
I heard about these positions you can get in that will make vertigo go away. Why can’t you just do that? There are maneuvers you can do to help certain types of vertigo. However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer this much if it was so simple to “cure” my vertigo?)
Do you think this could have been caused by all the drugs back when you were younger? Okay, this one caught me off guard. I thought, what the heck is she talking about? I may have experimented a little when I was younger, but she wouldn’t have known that. I must have looked shocked and said, “nooooo?” She then explained, “All those psychiatric drugs they put you on.” I was shocked. How could someone think that the treatment I received for my mental illness caused me to get chronically ill? I’m sure I looked shocked when I answered, “No.” “Well I was thinking….” I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease. They have no idea what causes this.” “That’s good to hear, I’ve been so worried about it.” “Well there is no need to worry about that. The medication I’ve taken for my Bipolar did not cause me to get ill.” AHHH!
This last question has continued to plague me. Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?
I have Bipolar I disorder. I take medication for it. I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself when you have a mental illness than just taking your medication.
I have never been afraid of taking my medication. Each time my medication is changed my doctor and I talk about it. We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it. I don’t just take a medication not knowing what it will do to me. No one should do that. If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with. I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something. It happens, doctors are human too.
I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid. It did. I now have to be on medication for hypothyroidism. Am I upset that the medication caused this side effect. No. I went into this with my eyes wide open. At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause. I’m still happy I decided to take that medication and have those years as a stable person. Truthfully, I would take it again today if that was the only medication that would keep me stable.
I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on. Become informed. Know what the medications will do. Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.
Many of you may be thinking that there are times that a certain side effect is unknown. You are right. There are many stories of someone who took a medication and had a severe reaction. There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could. These stories are not typical. We simply can’t live in fear and not be treated because of the “what ifs”.
I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way. I can almost tell you for certainty that I would not be alive to write this post. I will never regret taking the medications that helped save my life.
Picnic with Ants 
Can I ask if you’ve explored jaw or tmj issue with an advanced trained dentist (not a regular dentist who doesn’t get the proper training in dental school, must have taken post grad courses)? I’m in a group with many that have since found this to be the cause of our sty morons and not Menieres. ENTs, neuros, Otologists will not be helpful here as they don’t understand the correlation of jaw to ear or vestibular symptoms. But they are very wrong and mislead. Please let me know if you have questions. I suffered for 7 years (the person who pushed me to see an advanced trained dentist suffered with ‘Menieres’ for 25 years only to find out and get nearly fully relieved from fixing her jaw. WE NEVER HAD ANY JAW PAIN THAT WOULD LEAD US TO THINK THIS SO PLEASE DONT RULE IT OUT. Best in health, Jara
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First, I think this is a really funny post for you to ask me if I’ve tried something.
Second, I just saw one of the highest trained dentist I could find, everything was checked out. No TMJ issues. I see a neurologist who specializes in headaches and she tested me for TMJ issues a couple of years ago. Again, no TMJ problems.
If there is something out there, I’ve probably tried it, unless I needed to mortgage my house to pay for it.
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Oh. My. Goodness. This was a “go back and read once more” post for me. I was shaking my head yes through some of it, and frankly found myself longing to give you a huge hug.
Can I tell you how many times I have heard the YOGA crap? Or “strengthen your core” crap?
I have also been gently chided for not getting the maneuver done to “move the crystals in my inner ear to cure the balance issue”. I even had a vestibular rehab specialist tell me she wanted to do this for me. I explained that it only works for certain kinds of balance issues and that it has not been shown effective for most with Meziere’s disease. She scoffed. SCOFFED. (I quit going to her).
I had NO history of taking recreational drugs as a youngster. I also did not start depression medication until I was 28. I was diagnosed with Meziere’s at 33 but had all the markers for it since I was 22. However, I think you are on to something about why some folks worry about taking medication for mental illness. You explained everything perfectly. I’m pretty blunt to people who ask why am I on anti-depressants long term. I explain that I would have taken my own life long ago if my mental illness were not being treated both medically and through counseling. They usually shut up
Hugs to you and I want to share the link to this post with others!
Denise
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Oh Denise, I just want to hug you too!!
xo
wendy
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Wow – thank you for you update – love to you and Stuart❤️
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Good share Wendy. I do practice yoga and find that it helps me a lot – especially just to have the tools to cope with a spell when they occur – it has helped teach me that ‘this too shall pass’. Some days I can’t balance to save my life, and other days are better.
I find my hearing disability one of the most difficult parts. A week or so ago at work a man was trying to ask me a question and I was not able to hear him over the other noises (inside and outside of my head!) – I had to ask him to repeat himself and he got upset. No one ever expects that someone under 40 has a hearing disability – and some people just don’t believe it if I do tell them. It’s a good reminder that our impressions of people are almost never accurate – don’t judge a book by its cover!
I feel you about people asking if you’ve tried this or that…. sometimes I”ll say – just assume I’ve tried everything. It’s been 12 years since I was diagnosed, and it certainly feels like I’ve tried everything!
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keightyem,
I’m so glad you can do yoga. I miss it. and I’m glad it helps with your mindfulness. It is good for that. I used to meditate in full lotus, until my hip replacement.
I’m going to try Tai Chi, but I don’t think anyone else should be suggesting it to me if they aren’t my doctor.
I have a huge problem with hearing. It’s obvious I have a hearing disability and people still get annoyed when I have to ask them to repeat what they say, or remind them I need to see their lips. It’s sad that more people don’t take the time to understand disabilities.
Maybe I should add to my disclaimer at the top. I’ve probably tried it, so don’t suggest it. Ha. I’ve been dealing with this for 22 years and I’ve disabled by it for 8 years. as you said, it certainly feels like I’ve tried everything!!
Maybe I should just make a list for people of things I’ve tried and carry it with me. When they start to suggest something I’ll whip it out and ask them, is it on the list? If not then you can talk to me about it, if so, leave me alone. 🙂
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A LIST is a brilliant idea. Make a bunch of copies, so you can send them away with one. 🙂 I know that most people are simply trying to be helpful, but for those of us who have been struggling for years it is beyond tedious!
xx,
mgh
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I was just “accosted” by a lady yesterday at the dumpster asking me all kinds of questions–when did I move in, which building do I live in, which apartment, where do I work? I told her I’ve been housebound for 12 years and I got that immediate look of condemnation and judgement–“well, you don’t look it”, she says in that tone shaded with liar-liar undertones. Even though I’m used to the reaction, it still annoys me. Have to shake it off. Sometimes it takes a while. hugs
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Yep we have to shake it off. I get that look too every time I say I’m disabled when I’m asked where I work. Well get over it. If you want to know more, ask. If you want to judge me, that isn’t my problem. Get over yourself.
Maybe we should just say we are retired. Or self employed, aren’t people employed when they have a blog? I might not make money off of mine, but I work at it. does that count. I have an internet business. LOL.
We are also artist. That counts. We might not get paid for it…not any more anyway…but it’s real. You do a lot.
Judge if they want. It isn’t our problem.
(yes I have to keep reminding myself of that.)
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Oh Wendy – you blog my pain! Well, not exactly, but close enough. I can’t tell you how often I have wanted to respond, “Can you possibly believe that if “the fix” were something as simple as you suggest that I haven’t ALREADY tried it? Do you honestly believe that I simply ENJOY struggling with focus and follow-through – that I LIKE appearing flaky to others?”
As for the “dangers of medication” comments, I actually DO respond with, “Thanks, but until you’ve done as much research as I have, I really can’t entertain your essentially uneducated thoughts on the topic. Please don’t suggest anything like this again – it’s not only NOT helpful, it makes things tougher for me to have to overcome thinly veiled judgment from people who know less about it than I do myself.” (I have it memorized – lol)
Yep – they don’t like it (and may decide they don’t like ME after I respond with that comment), but I r-e-a-l-l-y don’t like it when people talk to me like they believe they know more about what’s going on with me than I do – and I’ve grown tired of “eating it!”
YOU GO GIRL! (back for more catch up when I have more time)
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to educate a world!”
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I don’t know if it’s because I don’t share as much, or I don’t share clearly enough, about my challenges, but I don’t get too much of that…thank goodness! I’m always amazed at how many will just toss out suggestions without actually understanding what’s going on for the particular person. I have found myself explaining for OTHERS why a flip comment or “suggestion” doesn’t begin to show any real understanding of the nuances of a situation. I have come to think that a lot of times, some just want to say something, and are not really listening. What pisses me off is when professionals do not listen. Thank you for sharing this piece!
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I find dealing with people’s unhelpful attitudes more disabling than my disability 😦
Being viewed as a liar or a drama queen (that’s just the docs and gov bodies ‘assessing’ you with their so called medical experts!).
Then there’s the strangers you come across who ask really rude questions in front of other strangers. If it wasn’t related to health, these intimate questions wouldn’t be fired at you…
I agree with being your own medical advocate…informing yourself from the right sources about your health situation. In England the doctors (NHS) expect you to tell them what you want to do! – and then, you are harshly berated for looking something up!! 😮
Love + Hugs fellow warrior! xo
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